Burden of lupus on work: Issues in the employment of individuals with lupus

Abstract

BACKGROUND: Systemic lupus erythematosus (SLE) or Lupus is one of the leading causes of work disability in the United States, accounting for about 20% of the more than estimated 1.5 million Americans with a work disability. The symptoms of lupus can have a profound impact on the person’s employment. Impacts of lupus are more pronounced among young and middle-adulthood. Studies have shown that loss in work hours cost the nation nearly $13 billion annually. The loss also impacts the individual’s work, quality of life, self-management, and self-efficacy.

OBJECTIVE: In this article, the author describes the financial burden of lupus. The article also describes the substantial impact of lupus on employment outcomes for individuals living with the condition. The author also reviews major signs and symptoms of disease and their impact on employment.

RESULTS: Findings from this research can be used to identify various accommodations and strategies for individuals to prevent flare-ups.

CONCLUSIONS: The paper presents innovative strategies that include early interventions and how employers andco-workers can provide helpful support that includes job accommodations to individuals with lupus.

Keywords

Lupus systemic lupus erythematosus SLE employment work disability vocational rehabilitation

1 Introduction

Work is viewed by individuals as a main part of their life, central to their being and an important source of self-identification in our society [1, 2]. Systemic lupus erythematosus (SLE) or Lupus is one of the most serious, multisystem, debilitating and complex of the chronic autoimmune diseases, characterized by periods of exacerbation (flares) and remission [3 –6]. Lupus is one of the leading causes of work disability in the United States [7]. Functional limitations in lupus are due to its multiple organ involvement, multiple symptoms, and variable activity, severity and damage. These limitations can impact individuals’ ability to sit, stand, walk, lift, push, pull, bend, or perform other physically demanding activities. These limitations may interfere with individual’s ability to work. Studies show that lupus has a significantly negative impact on work participation, including loss of employment and can also result in numerous barriers to job retention [8, 9].

Lupus affects a conservatively estimated 322,000 to possibly over a million people in the United States [10, 11]. Seventy-eight percent of lupus clients are women, and lupus strikes mostly women of childbearing age [15 –44]. However, men, children, and teenagers develop lupus, too [12 –14]. Nine times more women than men have lupus, and the disease disproportionately affects women of color, as much as two to three times the risk than whites (Hispanic, Asian, and Native American descent) [5, 11].

Lupus can be a difficult, complex and uncertain disease to manage, as most individuals are diagnosed in young adulthood. Lupus is prevalent in young age when individual is in the prime of their life in terms of careers, job opportunities, and family. As young adulthood is the most productive years of life, however individuals with lupus are often unable to work in the period of life that is also associated with highest earnings [5 , 15]. This is a time when the impact of lupus can have a profound effect on individual’s employment or career development. In this article, the author describes the lupus conditions that can affect employment outcomes of individuals living with the condition. The author also reviews the financial burden of lupus, the major signs and symptoms of the lupus, difficulties associated with them and how they impact employment and disease prevalence and need of interventions to reduce work loss or disabilityin lupus.

2 Lupus: Overview

Lupus is a chronic, incurable, and unpredictable auto immune disease characterized by periods of exacerbation (flares) and remission. Lupus affects each individual differently and the effects of the illness range from mild to severe and can involve various organs of the body [16]. The disease is known to have periods of flare-ups (the symptoms worsen and individuals feel ill) and periods of remission (partial or complete lack of symptoms). Lupus can range from mild to life-threatening symptoms. Lupus condition requires long-term management [17]. Stress, fatigue, pregnancy, childbirth, or exposure to sunlight may trigger symptoms. Although there is no known cure for lupus, the disease can be treated in order to decrease the frequency and severity of symptoms and lupus “flares.” Flares bring flu-like fever, fatigue and malaise, along with arthritis and a butterfly rash and/or body rash and may affect organ function and sometimes require hospitalization [18].

Unique features of lupus include an overwhelming female predominance, earlier age at onset of disease and unpredictable course. Lupus is also hard to diagnose because many of its symptoms occur in unpredictable outbreaks and may look like other diseases including multiple sclerosis or chronic fatigue syndrome. Individuals with lupus are sensitive to ultraviolet light which can trigger a disease flare in some of these individuals. High prevalence of fatigue and cognitive impairment may also compromise work capacity [5 , 19].

Lupus symptoms can range from mild challenges to severe limitations and vary from person to person. Lupus, being an invisible illness, can prohibit the sufferer from enjoying life in the way they once knew. Survival rates of lupus have increased over the years due to improvements in medical treatment [20]. The ten year survival rate is close to 90% in more recent studies [21, 22]. Due to the chronic and unpredictable nature of the disease, and the pattern of flares, lupus poses an enormous burden on a patient’s quality of life. Newer and more effective treatments for lupus are urgently needed. Furthermore, surveys of European SLE individual’s associate fatigue and burden to others as primary causes of decreased quality of life, impaired productivity, and hindered career choices. However, the disease is still associated with increased mortality, increased co-morbidity and lower health-related quality of life (HRQL) compared with the general population is able to now able [17, 18]. Symptoms such as fatigue and pain can limit the level of activity one can sustain. This may also cause difficulty with keeping up one’s normal pace at work. Lupus has a complex and fluctuating condition, which varies greatly between individuals. It can be severe and at the same time almost invisible; there are often no physical changes in somebody diagnosed with lupus. There can be straightforward and inexpensive strategies to minimize the effects of lupus on employment, from which both the employers and employees benefit. If people are absent from work for long periods of time it becomes extremely difficult for them to return - which argues strongly for focusing efforts on enabling people to remain in work.

3 The financial burden of lupus

According to Lupus European Online (LEO) survey, lupus affects the careers of seven out of 10 people living with the disease [23, 24]. Career disruptions due to lupus often exact a heavy financial and emotional toll. The impact of lupus can involve things such as quitting work or retiring earlier than planned, as well as changing a job to a less strenuous job.Studies on workplace productivity and costs of lupus also reveal poor outcomes. Studies have shown that lupus can also reduce an individual’s ability to work and results in high rates of work disability, reductions in working hours and changes in the nature of a patient’s work [12 , 25].

The financial burden of lupus is considerable, not only due to healthcare costs but also because of work disability [6, 25]. Work disability is defined as the inability to do paid work due to illness, is multifactorial, with profound repercussions for both the individual and society. For society, work disability means lost labor contribution and increased social program costs [25]. Necessity of frequent doctor’s visits, disease-associated hospitalizations and disease-associated disability significantly affect the quality of life of individuals with lupus and is associated with high health-care costs and significant productivity loss [26]. Factors associated with increased cost of SLE include long disease duration, high disease activity and damage, poor physical and mental health, and high education and employment levels [6, 8].

3.1 Direct health care costs of lupus

Direct health care costs refer to all the resources consumed in delivering care to the patient included costs for hospitalizations that includes in-patient, out-patient and emergency care, physician visits, outpatient surgical procedures, dialysis, and medications. In a study on direct costs of lupus, results showed that [27], mean annual direct costs of SLE patients ranged from $13,735–$20,926; the costs of those with and without nephritis ranged from $29,034–$62,651 and $12,273–$16,575, respectively. Across studies of a general SLE population, pharmaceutical costs composed 19–30% of total expenditures, with inpatient costs accounting for 16–50% and outpatient costs accounting for 24–56% of overall costs. According to a Lupus Foundation of America (LFA) [10] survey, conducted in October, 2008, this study estimated that lost hours of work cost these Americans nearly $13 billion annually. These included time lost from current work, inability to work at all, or to work full-time, as well as costs associated with the necessity to hire outside help within the home to assist with tasks no longer possible due to disease progression, such as housework andyard work.

In a study conducted by Panopolis, 2007 [29], results indicated that persons with SLE incur a mean annual direct cost of $12,643 in 2004 US dollars. Participants of working age incurred mean annual productivity costs of $8,659, assuming an average national hourly wage of $18.09. Study analysis showed that the strongest predictors of increased direct costs were greater disease activity, longer disease duration, and worse mental and physical health status (as assessed by the SF-12 health status questionnaire), whereas older age predicted lowerdirect costs.

The higher cost is also related to medications, especially immunosuppressants and biologics were more often prescribed in severe patients and to treat severe flares.

They represented approximately half of the cost. There are substantial indirect costs as well, reported to be between 2.4 and 2.8 times higher than direct costs [30]. In addition, the patient burden and impact of SLE on patients’ and caregivers’ quality of life have been demonstrated to be substantial.

3.2 Indirect economic cost of lupus

Lupus accounts for mean annual indirect costs of $56,745 [9]. In the workforce, high indirect costs are reported in patients with lupus not only due to early work disability and retirement but also lost productivity resulting from unemployment and absenteeism, with ‘in-flare’ patients with SLE (when the disease gets worse and symptoms develop, it’s called a flare) having increased frequency and duration of time off work [9 , 31]. Indirect costs incorporate the loss of self-esteem, limited social opportunities, and diminished ability to accumulate assets for retirement owing to loss of productivity [31]. These costs include loss of productivity in work, school, parenting, and maintaining a household [5 , 32].

The hallmark of the disease symptoms and severity of lupus vary tremendously between people [6, 9]. Lupus can attack almost any part of the body, from the skin and joints to the heart and brain. Fatigue, skin rash or facial butterfly rash over the cheeks and arthritis are hallmarks of lupus [15, 33]. The butterfly rash is the most visible and recognizable symptom of lupus and it is a kind of skin condition typically characterized by the appearance of rashes across the cheekbones and over the bridge of the nose. These rashes are usually red or purple in color in either a blotchy pattern or completely red over the affected area, and can be flat or raised in nature. The rash can be mild or severe but is not usually painful. The lupus butterfly rash presents itself in around 40% of lupus sufferers [3 , 32].

There are other symptoms of lupus that may not cause major organ damage or lead to major morbidity. However these symptoms can have a significant impact on patient’s daily life and that can include fatigue, joint pain, sleep disturbance and cognitive dysfunction. These symptoms can lead to difficulty in walking, carrying groceries, or getting dressed [9 , 33]. As a result, many people have fatigue, weight loss, and a mild fever. Other common symptoms include generalized aching, weakness, chills, pleurisy (irritation of the membranes lining the chest), arthritis, anemia, abdominal pain, reduced efficiency of the kidney or bladder, enlargement of the lymph glands, spleen or liver, seizures resembling epilepsy, and depression [3 , 34].

4 Symptoms and their impact on employment

Symptoms such as pain, fatigue, anxiety, depression, and neurocognitive involvement have been associated with work loss [12]. The symptoms of lupus can have a profound impact on the person’s employment, which ties in with equally important issues of quality of life, self-management, and self-efficacy [35]. Lupus functional impairment and role restrictions are significant disease-related issues. SLE causes a variety of functional limitations which are the direct result of lupus symptoms. Some of these functional limitations may include a restriction on the distance a person can walk, a lack of hand dexterity due to arthritic symptoms, and a limited amount of time a person can spend in direct sunlight [31]. Repetitive activities are apt to increase joint inflammation [6 , 36]. The following symptoms affect a person’s ability to work.

4.1 Fatigue

Fatigue is often described as the most common and pernicious symptom of lupus, affecting approximately 80% to 94% of those diagnosed at some point in the course of their illness [8 , 32]. Lupus fatigue is more frequent, persistent, and unpredictable and thus can be very different from ordinary tiredness it is not resolved by rest and impairs all aspects of a patient’s quality of life [32]. As a result, simple physical and/or mental activities can leave somebody with lupus feeling exhausted and struggling to function [12, 31]. The impact may be felt immediately or it can take a day or two to take effect.

Fatigue with lupus is sometimes caused by an underlying medical problem, such as anemia, fibromyalgia, depression, or a kidney or thyroid problem. And in some cases, it can be a side effect of medication that can be treated by treating the condition or changing the patient’s medication [35]. A person may need work accommodations to manage fatigue. Persistent fatigue can cause problems at work and at home [9]. For example the clerk receptionist will have to spend long hours using office equipment and computers, and with lupus can cause physical fatigue and as a result, has difficulty making it through her shift. In this case the employee should be able to work with their boss to restructure their duties. The employee can also request a stool because sitting greatly reduces the fatigue. Fatigue can be worse at the beginning and end of the day, so one has to think about working part-time, or coming in later and leaving later in the day. Otherwise, if possible, mixing mini-breaks in their work day rather than taking one long lunch hour.

4.2 Pain

Approximately 50–90% of patients with lupus report pain in in the musculoskeletal system affecting joints such as the fingers, hands, wrists and knees, with some patients developing secondary osteoarthritis [32, 37]. As a result individuals with lupus may experience some joint or muscle pain, commonly caused by inflammation of the joints. Pain can manifest itself in many different ways such as: aching muscles or joints, headache or migraine, nerve pains, abdominal or stomach pain, twitching muscles or cramps. This muscle pain is also associated with higher degree of fatigue, anxiety, and depression [6 , 31]. This pain may lead to difficulty doing housework, gardening, and even occasionally attending to personal hygiene [31, 32].

Studies have shown that pain symptoms have been associated with work loss [12]. In addition to depression, pain was found to have a significant impact on fatigue. Studies support the need for assessing pain and depression among individuals with lupus. Studies also suggested the need of treating mood disorders and pain in order to improve lupus fatigue. Several medications and pain management interventionsare available. If depression is there, counseling or anti-depressants might be used [6, 12].

4.3 Cognitive difficulties

Lupus can affect many organs in the body, including the brain, thus causing cognitive dysfunction. This is often described as ‘brain fog’ and can include short-term memory problems, word-finding difficulties, issues with reasoning and confusion, slurred speech, an inability to plan or organize thoughts, or loss of concentration [31, 32]. Thus it is important to implement strategies and use job accommodations such as establishing routines to conserve energy using organizers, developing lists of things to do to retain information, and pacing oneself [31, 38].

4.4 Problems with mobility or function

SLE has a significant negative impact on patients’ physical functioning, such as walking difficulty and other mobility problems due to joint pain [31, 39]. In a study conducted by Gallop, Nixon, Swinburn, Sterling, Naegeli, and Silk [40], 64% participants described their physical activities, such as walking, limited by joint pain and fatigue. Some participants reported that they could not walk as far as they were previously able to. An occupational therapist can help by assessing the level of functioning and limitations and see what kind of modifications and equipment are needed to help adapt to new situations. There is a self-help device called adaptive equipment [that means daily living aids) that assists a person with limited mobility. These are aids to help individuals with lupus open up jars, zip up jackets, button clothes, open doors, and adaptive equipment for cars [31, 38].

4.5 Sensitivity to UV light

It is important to avoid Ultraviolet (UV) light, in particular UV-A1 and UV-B as it can induce flares in patients with SLE and trigger onset of SLE. Photosensitivity is a known trigger for systemic disease. Research shows the possible detrimental effect of exposure to artificial light. UVA2 and UVB can exacerbate skin disease in patients with lupus, while UVA1 may be protective [41, 42]. In one study, individuals with SLE had an increased risk for blisters and/or rash after 2 hour exposure to sunlight. Some may need to avoid sunlight; others can also react badly to fluorescent strip lighting [41]. Individuals with lupus may need to give up outdoor activities or at least activities that entail exposure to the sun. When they cannot avoid sunlight, they may need to wear extra clothing or hats or use umbrellas to protect themselves from the sun [42].

5 Lupus treatment and management

Current SLE treatment regimens include three major medication classes: corticosteroids (CS), immunosuppressants (IM), and anti-malarials (AM). These therapies are frequently associated with adverse effects [8, 43] that affect patients’ physical well-being and everyday activities. Today people can manage their symptoms more effectively than in the past. This is due to a combination of drug treatments (including disease modifying drugs, non-steroidal anti-inflammatory drugs and pain killers) and other, non-pharmacological management strategies. These strategies can range from using wrist splints to self-management techniques such as pacing and energy conservation. For persons who are sensitive to ultraviolet light, avoidance of fluorescent lighting and sunlight is necessary. According to Elbirt [43], an eight week aerobic conditioning program was found to decrease the fatigue and a medical recommendation for this might facilitate or enhance ability to work.

Treatment for SLE usually involves medication to ameliorate symptoms, the most common of which is joint inflammation. No one drug can cure SLE, but many different drugs can help control symptoms and relieve discomfort. The choice of drugs depends on the severity of the condition as well as other factors. Patients with mild SLE may be helped by nonsteroidal anti-inflammatories (NSAIDS), while patients with more severe SLE may require corticosteroids or immunosuppressants [6 , 31]. Steroids, most typically prednisone or medrol, can be prescribed in cream, orally or intravenously; however, they do have side effects. Cyclophosphamide (Cytoxan^®) is a chemotherapy drug that has very powerful effects on reducing the activity of the immune system. It is used to treat severe forms of lupus. Although pharmaceutical medications are available for pain management, many patients find relief in natural remedies like mind-body techniques. These combined exercise and meditation, like tai chi and low-impact yoga, may also be helpful. Other techniques include acupuncture, biofeedback, massage, and physical therapy, moist heat, baths, showers, acupuncture, yoga, and chiropractic care [8 , 43].

Sometimes orthopedic surgery is necessary. Individuals with lupus frequently need joint replacement surgery because they are treated with steroids that can lead to osteonecrosis (bone death caused by poor blood supply). However, identifying the risk of joint replacement in lupus individuals and the factors contributing to this may allow preventive action. Unfortunately, many of these treatments are physically and emotionally debilitating [32]. Due to immobilization after operation, screening for deep vein thrombosis (DVT) between day 3 and 5 after operation are routinely carried out in individuals. Immunosuppressants have especially powerful side effects [37]. Prednisone, a synthetic steroid hormone widely used to treat lupus, can cause depression, irritability, sleeplessness, hirsutism, a moon face, weight gain, loss of muscle tone, bruising, hip-joint damage and loss of menses and of sexual desire. In some people, it causes severe depression, impaired cognitive processes, and even psychosis [31, 43]. It is advised to avoid high impact activities, such as tennis and jogging as these can put too much wear and strain on joint. However, low impact activities, such as golf, generally do not affect the wear of joint replacements [8, 22].

Often patients who have hip or knee replacement surgery will return to work somewhere between 4–6 weeks after surgery, depending on the physical demands of their job. It is common to return to work part-time or on light duty at 4–6 weeks, and then return back into full work activities between 6–12 weeks [29]. Sometimes it is also possible that the body does not react well to surgery either, and healing can be a very long process. As a result these individuals with lupus will miss work and cannot return as planned. Employers need to understand these individuals with lupus situation [44].

Cognitive rehabilitation, which involves intensive retraining of cognitive skills, is an alternative or complementary therapeutic approach [31, 45]. Cognitive rehabilitation teaches patients with cognitive dysfunction a retraining in the ability to think, use judgment, and make decisions. The focus is on correcting deficits in memory, concentration and attention, perception, learning, planning, sequencing, and judgment. It is important to adapt to their impairments in order to maintain, if not regain, some level of independence. Cognitive rehabilitation improves intellectual problem solving, cognitive organization and memory skills. Cognitive rehabilitation also provides education about the brain, methods for information processing and energy conservation techniques. In an investigation of a novel psycho- educational group intervention targeted specifically at individuals with lupus with self-perceived cognitive dysfunction [46], findings demonstrated that individuals participation may result in improvement in memory function such as less difficulty in recalling conversations, tasks, or appointments and ability to perform better simple tasks like planning for and preparing a meal as a daily activity that also require cognitive function.

6 Lupus and work limitation/productivity loss and social security benefits

Lupus with onset in the early part of a person’s work life has profound repercussions for the working lives of the individual and also on family, stemming from financial hardship, loss of self-esteem, opportunity to socialize, loss of current earning and ability to accumulate assets for retirement [31, 32]. Lupus’ clinical manifestations can cause functional impairments that diminish activity and productivity at home and work. In the workforce, high indirect costs are reported in patients with lupus, not only due to early work disability and retirement, but also due to lost productivity resulting from unemployment and absenteeism. Even further in the case of ‘in-flare’ individuals with lupus have increased frequency and duration of time off work [9 , 29]. Indirect costs of poor health including absenteeism, disability, or reduced work output, may be several times higher than direct medical costs of lupus [29, 31].

Studies shows that some individuals with lupus who were working found it difficult to continue in their job not only due to the symptoms but also due to the unpredictability of the disease. Consequently, needs for treatment interventions of occupational therapy and work maintenance programs to help people with chronic diseases to remain in the workforce is quite large. Some individuals with lupus may have to give up their work with the resultant loss of income, which in turn has a negative emotional impact with increased worrying [1 , 19]. Among these people with lupus, diagnosis occurred in their mid-30 s. More than half of those lost 20 years of earning potential. Younger individuals with lupus may also feel that as the lupus disease is uncertain so is an hindrance to their career progression mainly because they were unsure how their disease would be in the future and whether they could take on more responsibility [30, 31].

Individuals with disabilities have a low rate of allowed claims from social security and the low level of monthly benefits available to patients who receive assistance through the SSI federal disability programs. Thus it is important for doctors, counselors and employers to make efforts to help patients maintain employment and prevent work disability [7].

In a survey of over 2,070 lupus patients conducted to identify the impact of the disease on life of SLE patient the survey involved 76 patients with SLE [26]. The findings were presented at the Annual Meeting of the European League against Rheumatism (EULAR) in London. Results showed that lupus negatively affects patients’ career as up to 39% of SLE patients stated that they had to change a job due to their disease. 24% of them had a job below their qualification level, and 46% indicated lower income due to their disease.

An online survey was developed to understand the impact of SLE on patients’ daily lives and career. In this Lupus European Online (LEO) survey, 27% had needed to apply for long term sick, 28% had needed to apply for a social security disability allowance and that only 52% were in current employment. Fatigue, inability to plan ahead and reduced physical health were significantly associated with impaired productivity. Furthermore the survey revealed that 28% of responders reported that they had needed to change careers as a result of their condition within the first year of diagnosis. Of those respondents who were employed, 60% reported that the disease had led to a reduction in their working hours by more thanhalf [24].

Besides work disability, lupus may lead to “presenteeism”. Gordon et al. [13] states that Presenteeism can create a substantial economic burden not only on individuals but society as a whole. This can lead to lower quality work, more mistakes, and poorer staff morale. Presenteeism can be defined as “the decrement in performance associated with remaining at work while impaired by health problems”. One aspect of concern related to presenteeism is that it is not always identified or noted since the worker is actually present in the workplace [13]. Presenteeism, or illness related decrease in performance, can be conceptualized from two different perspectives. It can be viewed as a disease outcome measured by work limitations or difficulties. It can also be viewed as a cost, indicated or represented by loss of time and money. For society, work disability means lost labor contribution and increased social program costs. Premature work cessation is a serious consequence of health conditions.As suggested by Allaire, 2013 [23, 25] in a research study conducted by Yelin, 2007 [19, 23], 40% of participants with lupus reported premature work cessation 10 years after disease onset.

Once an individual leaves the work force and is considered disabled, there are a number of barriers preventing a successful return to employment [44]. The most significant barrier to reentering employment is receipt of disability benefits which generally include a monthly monetary benefit and health insurance [47]. In 1986, only 3-4% of Social Security Disability beneficiaries voluntarily left the rolls [47].

Modification of work hours, job responsibilities or allowing more frequent breaks or work at home might allow persons with fatigue to work longer. People may be able to manage the neurologic and cognitive problems by using compensatory strategies such as memory devices on their computers or a palm pilot. Modification of the work area may decrease fatigue and increase alertness [31]. More research is needed to examine factors related to work and changes people with SLE make to continue to working.

Additional research on the risk factors for work disability in lupus patients and on strategies for reducing the impact of these risk factors on work-related activities is needed. Some evidence indicates that certain specific clinical factors such as neurologic symptoms, joint pain, and fatigue may be primary factors contributing to work disability or decreased work capacity in lupus patients. If a patient’s job involves physical labor that aggravates joint pain, certain assistive technologies or vocational rehabilitation may be useful in allowing the person to continue to perform his or her duties [31]. Similarly, if fatigue is the main factor contributing to work disability, exercise programs or flexible work schedules may be helpful. Studies that attempt to better characterize the reasons why disabled patients with lupus are unable to work are needed before such interventions can be developed [7].

7 Potential challenges to employment of individuals with lupus

Though it is a challenge for individuals with lupus to seek employment, there is no compelling reason why an individual with lupus should not seek employment if he or she is in stable health and has the desire to work. Individuals with lupus frequently face work-related physical limitations. People were more likely to use the Americans with Disabilities act (ADA) when their physicians or other health care providers suggest it. At some point, some people with lupus need to consider whether they should stop working altogether. Research shows that [31, 38], individuals with lupus experience substantial and significant challenges at the workplace as lupus is a disease of flares and remissions. The problems that can arise at work when someone has difficulty paying attention, concentrating and remembering are also obvious. Most jobs are not just rote and repetitive, but require people to remember new information or deal with changing demands. This is difficult when cognition is not working well. Lupus can be especially hard to manage at work, where concentration and memory problems might make one look lazy or unreliable. Due to the cognitive difficulties associated with lupus, an individual may lose a job also. Under the ADA, the individuals are eligible for job accommodations, so these individuals with lupus may decide to talk to their managers about the problem. However due to lack of awareness of their rights under the ADA some of them may have to give up their work with the resultant loss of income, which in turn has a negative emotional impact with increased worrying. Individuals with lupus may need to be evaluated for a substantially new career due to the life altering symptoms, like cognitive dysfunction, caused by Lupus[6, 8, 31].

8 Employer and co-workers misunderstanding

One of the greatest difficulties employers often have concerns the nature of the disease itself. Lupus is a complex and fluctuating condition, which varies greatly between individuals. It can be severe and at the same time almost invisible; there are often no physical changes in somebody diagnosed with lupus. Research shows that [38], lupus is an invisible disability and is also protected under the ADA. Individuals with lupus may look perfectly fine from the outside though they are sick and physically suffering, and by looking at the person, it may be difficult to tell if he or she has any problem. Lupus impact is often invisible in the early stages, which can lead to disbelief and lack of support from employers, co-workers, and others. Often, other individuals have little knowledge about this episodic condition and as these conditions lack visible signs, it commonly evokes suspicion from others that the affected person is faking it [49]. The flare and remission pattern of symptoms also can be difficult for others to understand. It is important that employer and co-workers listen to their employee or colleague as some limitations cannot be seen, such as sensitivity to fluorescent lights and sunlight; sensitivity to cold temperatures and drafts; joint pain, inflammation, stiffness and fatigue [31 , 43]. Thus, it is important to enhance the knowledge and understanding about lupus and the needs of people at work who have it.

More knowledge and flexibility as in the case of employers could be important in enabling individuals with lupus to remain productive members of the workforce. Some people with relatively mild or well controlled lupus can continue to work normally, with few problems. However, the majority face challenges in the workplace. An occupational therapist and vocational rehabilitation (VR) counselor can visit the workplace to assess the employee’s job and their physical environment. They can evaluate job tasks and advise how they can be simplified or modified to reduce the effort needed. The rehabilitation counselor can identify the functional limitations associated with the disorder that may impact job performance and work productivity, as that will assist the counselor in introducing appropriate workplace accommodations. They may suggest: appropriate adaptations to equipment, assistive technology, other devices such as splints, and changes to the work environment or how the job is performed [31, 38].

9 Disclosure to employer and job accommodations

Studies have shown that SLE imposes a substantial cost burden to both patients and their employers. Some individuals experience a pattern of unpredictable flares followed by periods of remission; others may have a pattern of constant or chronic activity. As a result, individuals hoping that their health will remain stable tend to avoid disclosure ofLupus [32].

Most people with lupus are able to continue to work with or without the job accommodations under the Americans with Disabilities Act (ADA) [50]. The Americans with Disabilities Act prohibits employment discrimination on the basis of workers’ disabilities. The ADA also requires employers toprovide reasonable accommodations – changes tothe workplace or job – to allow employees with disabilities to do their jobs. It guarantees equal opportunity for individuals with disabilities in public accommodations, employment, and transportation. Reasonable accommodation is any modification or adjustment to a job or the work environment that will enable a qualified employee with a disability to perform essential job functions. A reasonable accommodation is assistance or changes to a position or workplace that will enable an employee to do his or her job despite having a disability. Under the ADA, employers are required to provide reasonable accommodations to qualified employees with disabilities, unless doing so would pose an undue hardship. Some employees may need changes to their work environment and schedules, such as flexible work hours, job responsibilities or allowing more frequent breaks or work at home to allow persons with fatigue to work longer job-sharing, and telecommuting. Impairment in work performance is the most important and easily calculated indirect cost to society [51].

People may be able to manage the neurologic and cognitive problems by using compensatory techniques such as memory devices on their computers or a palm pilot [48]. Modification of the work area may decrease fatigue and increase alertness. More research is needed to examine factors related to work and changes people with SLE make to continueto work.

10 Treatment and management

Though there is no cure of lupus, however there are a variety of effective treatments available. The treatment is based on symptom control by immunosuppressive and anti-inflammatory treatment. Interventions to reduce work disability might be possible. As cited in Agarwal [31], individuals with lupus need to be educated about energy conservation techniques and work with the occupational therapist (OT) to determine if any adaptive equipment will facilitate fatigue management. A referral to a recreational therapist may also prove beneficial as this specialist can help identify areas of recreation that can facilitate socialization. For example, a client who has painful or weak hands, may benefit from putting a jigsaw puzzle together, which is a light activity that enhances the patient’s eye-hand coordination and his/her ability to match pieces by color. Clients can do this while standing or sitting (whichever is most appropriate) and at the same time can be socializing with friends or family.

It might also be helpful to develop plans for managing stress. Specific strategies aimed at stress reduction could include using organizers and notes, providing written job instructions when possible, providing memory aids, such as schedulers or organizers, organization software, timers, and providing more structure to assignments and deadlines, acting deliberately and with concentration to retain information, pacing oneself and prioritizing [30, 31].

11 Early intervention

Early intervention is paramount to successful job accommodations or career transitions for individuals with lupus. Early identification by health care providers of individuals at risk for employment difficulties would increase the potential for successful accommodations that would lead to job retention [1]. Career and vocational rehabilitation specialists must be knowledgeable about the federal law and serve as a resource to people likely to benefit from job accommodations [31, 38]. Careful analysis of individuals’ work tasks, workplaces, and vocational aspirations at early stages of lupus may enhance their ability to sustain work. Because many individuals are reluctant to consider change until the need is apparent, they are not likely to bring up the prospect that lupus may alter their ability to work until such time as their work capacity is significantly compromised. Early intervention would provide opportunity for individuals to consider long-term effects of lupus and engage in appropriate career planning. This may be particularly important for younger individuals who are in the early stages of career development [1, 31].

12 Job accommodations

The most effective job retention interventions is accommodation of impairment- related work problems with an existing employer and change in job or career path [52]. Individuals who are able to change jobs with their current employers have better job retention than those who change employers [53]. It is much easier to modify an existing job than to find new jobs that are congruent with an individuals’ physical ability [23 , 52]. Additionally, established employers are more motivated to make accommodations to retain valued employees than are potential new employers. Job tenure is extended when accommodations are made for health-related work difficulties. Due to the chronic nature of most autoimmune diseases such as lupus, patients often miss extended periods of employment. Because of this, patients are faced with thousands of dollars in medical expenses that they can no longer afford due to lost wages [8, 31, 38].

13 Conclusion

In conclusion, this article, based on literature, suggested that people with lupus experience substantial and significant challenges with their employment. The symptoms of lupus can have a profound impact on the person’s employment, which ties in with equally important issues of quality of life, self-management, and self-efficacy. Job function and other life activities could be affected by the health status and careful attention and assessment of job analysis and then referral to specialized professionals such as occupational therapist, physical therapist and/or vocational rehabilitation specialist should be considered. Job retention services to prevent work loss and work disability are recommended for people with chronic diseases based on their high risk for work disability.

Conflict of interest

The authors have no conflict of interest to report.

References

Partridge

, Karlson

, Daltroy

, Lew

, Wright

, Fossel

, et al. Risk factors for early work disability in systemic lupus erythematosus: Results from a multicenter study. Arthritis Rheum 1997;40(12):2199–206.

Pack

, Szirony

, Kushner

, Bellaw

. Quality of life and employment in persons with multiple sclerosis. Work J Prev Assess Rehabil 2014;49(2):281–7.

Kuper

, Failla

. Systemic lupus erythematosus: A multisystem autoimmune disorder. NursClinNorth Am 2000;35(1):253–65.

Abbott

, Gray

, Williams

, Teh

L-S

. Patient perspective of systemic lupus erythematosus in relation to health-related quality of life concepts: A qualitative study. Lupus 2010;19(14):1640–7.

Moses

, Wiggers

, Nicholas

, Cockburn

. Prevalence and correlates of perceived unmet needs of people with systemic lupus erythematosus. Patient Educ Couns 2005;57(1):30–8.

Wallace

. The Lupus Book. 2000. Oxford Univ Press New York.

Scofield

, Reinlib

, Alarcón

, Cooper

. Employment and disability issues in systemic lupus erythematosus: A review. Arthritis Rheum 2008;59(10):1475–9.

Falvo

. Medical and psychosocial aspects of chronic illness and disability. Rehabilitation Psychology 2005;572.

Garris

, Oglesby

, Sulcs

, Lee

. Impact of systemic lupus erythematosus on burden of illness and work productivity in the United States. Lupus 2013;22:1077–86.

10.

Understanding Lupus [Internet]. Lupus Foundation of America. 2013. Available from: http://www.lupus.org

11.

Systemic lupus erythematosus (SLE or lupus) [Internet]. Centers for Disease Control and Prevention. 2012. Available from: http://www.cdc.gov/arthritis/basics/lupus.htm#2

12.

Baker

, Pope

. Employment and work disability in systemic lupus erythematosus: A systematic review. Rheumatology (Oxford) 2009;48(3):281–4.

13.

Gordon

, Isenberg

, Lerstrom

, Norton

, Nika”i

, Pushparajah

, et al. The substantial burden of systemic lupus erythematosus on the productivity and careers of patients: A European patient-driven online survey. Rheumatology 2013;52(12):2292–301.

14.

Bongu

, Chang

, Ramsey-Goldman

. Can morbidity and mortality of SLE be improved? Best Pract Res Clin Rheumatol 2002;16(2):313–32.

15.

Lahita

. Systemic Lupus Erythematosus/Edition 4 by Lahita

Robert G.

. 4TH ed. 2004.

16.

Beckerman

, Sarracco

. Listening to lupus patients and families: Fine tuning the assessment. Soc Work Health Care 2012;51(7):597–612.

17.

Clowse

MEB

. Dubois’ Lupus Erythematosus and Related Syndromes. Dubois’ Lupus Erythematosus and Related Syndromes 2013;455–63.

18.

McElhone

, Abbott

, Teh

. A review of health related quality of life in systemic lupus erythematosus. Lupus 2006;15(10):633–43.

19.

Yelin

, Trupin

, Katz

, Criswell

, Yazdany

, Gillis

, et al. Work dynamics among persons with systemic lupus erythematosus. Arthritis Rheum 2007;57(1):56–63.

20.

Ippolito

, Petri

. An update on mortality in systemic lupus erythematosus. Clin Exp Rheumatol 2008;26(5 Suppl 51):S72–9.

21.

Urowitz

, Gladman

, Abu-Shakra

, Farewell

. Mortality studies in systemic lupus erythematosus. Results from a single center. III. Improved survival over 24 years. J Rheumatol 1997;24(6):1061–5.

22.

Aberer

. Epidemiologic, socioeconomic and psychosocial aspects in lupus erythematosus. Lupus 2010;19(9):1118–24.

23.

Allaire

, AlHeresh

, Keysor

. Risk factors for work disability associated with arthritis and other rheumatic conditions. Work 2013;45(4):499–503.

24.

Schneider

. The Substantial Negative Impact of Systemic Lupus Erythematosus on the Working Lives of Patients: Results of the Lupus European Online Survey. Arthritis Rheum 2011.

25.

Allaire

, Keysor

, AlHeresh

. Effect of arthritis and other rheumatic conditions on employment. Work 2013;45(3):417–20.

26.

Macejová

, Záriková

, Oetterová

. Systemic lupus erythematosus– disease impact on patients. Cent Eur J Public Health 2013;21(3):171–3.

27.

Slawsky

, Fernandes

, Fusfeld

, Manzi

, Goss

. A structured literature review of the direct costs of adult systemic lupus erythematosus in the US. Arthritis Care Res 2011;63(9):1224–32.

28.

Zhu

, Tam

L-S

, Lee

VW-Y

, Lee

KK-C

, Li

. The impact of flare on disease costs of patients with systemic lupus erythematosus. Arthritis Rheum 2009;61(9):1159–67.

29.

Panopalis

, Yazdany

, Gillis

, Julian

, Trupin

, Hersh

, et al. Health care costs and costs associated with changes in work productivity among persons with systemic lupus erythematosus. Arthritis Rheum 2008;59(12):1788–95.

30.

Panopalis

, Petri

, Manzi

, Isenberg

, Gordon

, Senécal

J-L

, et al. The systemic lupus erythematosus Tri-Nation study: Cumulative indirect costs. Arthritis Rheum 2007;57(1):64–70.

31.

Agarwal

, Barnes

, Kumar

. Treatment planning for individuals with lupus: Case conceptualization using the DOACLIENTMAP framework. J Appl Rehabil Couns. NRCA 2015;46(1):14–24.

32.

McElhone

, Abbott

, Gray

, Williams

, Teh

. Patient perspective of systemic lupus erythematosus in relation to health-related quality of life concepts. a qualitative study. Lupus 2010.

33.

Beckerman

. Living with lupus: A qualitative report. Soc Work Health Care 2011;330–43.

34.

Tench

, McCurdie

, White

, D’Cruz

. The prevalence and associations of fatigue in systemic lupus erythematosus. Rheumatology (Oxford) 2000;39(11):1249–54.

35.

Cleanthous

, Tyagi

, Isenberg

, Newman

. What do we know about self-reported fatigue in systemic lupus erythematosus? Lupus 2012;21(5):465–76.

36.

Panopalis

, Julian

, Yazdany

, Gillis

, Trupin

, Hersh

, et al. Impact of Memory Impairment on Employment Status in Persons With Systemic Lupus Erythematosus. Arthritis Rheum 2007;57(8):1453–60.

37.

Holloway

, Humphrey

, Heron

, Pilling

, Kitchen

, Højbjerre

, et al. Patient-reported outcome measures for systemic lupus erythematosus clinical trials: A review of content validity, face validity and psychometric performance. Health Qual Life Outcomes 2014;12:116.

38.

Agarwal

, Yasui

, Kumar

. Lupus: Vocational Aspects and the Best Rehabilitation Practices. J Vocat Rehabil 2015;43:83–90.

39.

Jolly

, Pickard

, Wilke

, Mikolaitis

, Teh

L-S

, McElhone

, et al. Lupus-specific health outcome measure for US patients: The LupusQoL-US version. Ann Rheum Dis 2010;69(1):29–33.

40.

Gallop

, Nixon

, Swinburn

, Sterling

, Naegeli

, Silk

, et al. Development of a conceptual model of health-related quality of life for systemic lupus erythematosus from the patient’s perspective. Lupus 2012;21(9):934–43.

41.

Bijl

, Kallenberg

. Ultraviolet light and cutaneous lupus. Lupus 2006;724–7.

42.

Caricchio

, McPhie

, Cohen

. Ultraviolet B radiation-induced cell death: Critical role of ultraviolet dose in inflammation and lupus autoantigen redistribution. J Immunol 2003;171(11):5778–86.

43.

Elbirt

, Sthoeger

, Asher

, Sthoeger

. The management of systemic lupus erythematosus: Facts and controversies. Clin Dermatol 2010;28(3):330–6.

44.

Malviya

, Wilson

, Kleim

, Kurtz

, Deehan

. Factors influencing return to work after hip and knee replacement. Occup Med (Lond) [Internet]. 2014 Sep 1 [cited 2016 Jan 6];64(6):402-9. Available from: http://occmed.oxfordjournals.org/content/64/6/402.short

45.

Kozora

, Hanly

, Lapteva

LFC

. Cognitive dysfunction in systemic lupus erythematosus: Past, present, and future. Arthritis Rheum 2008;58(11):3286–3298.

46.

Harrison

, Morris

, Horton

, Toglia

, Barsky

, Chait

, et al. Results of intervention for lupus patients with self-perceived cognitive difficulties. Neurology 2005;65(8):1325–7.

47.

Yelin

, Henke

, Epstein

. The work dynamics of the person with rheumatoid arthritis. Arthritis Rheum 1987;30(5):507–12.

48.

Poole

, Atanasoff

, Pelsor

, Sibbitt

, Brooks

. Relationships between person and health factors and job characteristics in women with systemic lupus erythematosus. Work 2007;28(1):95–100.

49.

Vick

, Lightman

. Barriers to Employment Among Women With Complex Episodic Disabilities. J Disabil Policy Stud 2010;21(2):70–80.

50.

US Department of Justice. The Americans with Disabilities Act of and Revised ADA Regulations Implementing Title II and Title III. Laws/Regulations [Internet]. 2014;1990(c):1-51. Available from: http://www.ada.gov/2010_regs.htm

51.

Kessler

, Greenberg

, Mickelson

, Meneades

, Wang

. The effects of chronic medical conditions on work loss and work cutback. J Occup Environ Med 2001;43(3):218–25.

52.

Allaire

. Update on work disability in rheumatic diseases. Curr Opin Rheumatol 2001;13(2):93–8.

53.

Yelin

, Henke

, Epstein

. Work disability among persons with musculoskeletal conditions. Arthritis Rheum [Internet]. 1986 Nov [cited 2016 Jan 6];29(11):1322-33. Available from: https://doi-wiley-com.web.bisu.edu.cn/10.1002/art.1780291104